Acute flaccid myelitis (AFM) is a rare but serious illness that affects muscles, loss of reflexes
and can cause paralysis. Between 2014 and 2018 there were three spikes of AFM in the United
States: in late summer to early fall, over 660 cases were confirmed. In these outbreaks most
AFM cases were in children less than 5 years of age. (See ‘How a Summer Cold Led to a Rare
AFM Diagnosis,’ below.)
AFM may sound scary but it is very rare. It’s less than one in a million that a child might get it.
What causes AFM?
AFM is caused by several viruses (including West Nile virus), although it is unclear why most of
the time only one leg is affected. Enteroviruses other than polioviruses, like enterovirus D68
(EV-D68), so far new spikes have been causing new AFM cases. These viruses usually cause
asthma type symptoms like cough, cold and wheezing. These AFM spikes are common in late
summer and early fall. An EV-D68 outbreak in 2014 resulted in increased hospitalizations for
AFM. Since that 2014 outbreak, they have been identified more than any other virus in lab
samples from people who had AFM. The Centers for Disease Control and Prevention (CDC)
recently reported a recent uptick in children with respiratory illnesses caused by rhinoviruses
and enteroviruses, such as EV-D68.
Acute Flaccid Myelitis (AFM): Insights Into This Rare Paralyzing Condition
Acute flaccid myelitis (AFM) is a rare but serious illness that affects muscles, loss of reflexes and can cause paralysis. Between 2014 and 2018 there were three spikes of AFM in the United States: in late summer to early fall, over 660 cases were confirmed. In these outbreaks most AFM cases were in children less than 5 years of age. (See ‘How a Summer Cold Led to a Rare AFM Diagnosis,’ below.)
AFM may sound scary but it is very rare. It’s less than one in a million that a child might get it.
What causes AFM?
AFM is caused by several viruses (including West Nile virus), although it is unclear why most of the time only one leg is affected. Enteroviruses other than polioviruses, like enterovirus D68 (EV-D68), so far new spikes have been causing new AFM cases. These viruses usually cause asthma type symptoms like cough, cold and wheezing. These AFM spikes are common in late summer and early fall. An EV-D68 outbreak in 2014 resulted in increased hospitalizations for AFM. Since that 2014 outbreak, they have been identified more than any other virus in lab samples from people who had AFM. The Centers for Disease Control and Prevention (CDC) recently reported a recent uptick in children with respiratory illnesses caused by rhinoviruses and enteroviruses, such as EV-D68.
Can AFM be prevented?
We don’t know why some kids get this after a common viral respiratory infection and some kids don’t. However, parents can remind children to follow these simple steps to help avoid illness:
- Frequent handwashing
- Keeping up to recommended childhood and adolescent immunizations.
- Sanitizing and disinfecting household surfaces
- Not sending your children to child care or school when they’re sick.
- Put on insect repellent if you can see or soon will be near mosquitos
See a doctor or seek emergency medical attention if your child has suddenly become droopy or weak on one side or the arm or one leg or has trouble walking or talking.
Now look at how a childhood Summer Cold led to Rare AFM Diagnosis
Each of us has a picture of how our lives with a family should look. Lives can be wrecked in a thousand different ways. It’s happened for us when our perfectly healthy 5 year old son, Braden, was suddenly paralyzed over the 4th of July Holiday in 2016. Many ways by which lives can be derailed exist. The big one for us was the July 4, 2016, when our perfectly healthy 5-year old son, Braden, was suddenly paralyzed.
The week before he’d had a cold. He was lethargic on the 4th, couldn’t keep food down. We just missed his symptoms and were so busy. I knew his swallowing muscles were being paralyzed, and that it was becoming paralyzed all over his body. The paralysis reached his diaphraghm five days later and he stopped breathing. He was intubated and life flown to a major hospital. That’s when we got the diagnosis of acute flaccid myelitis.
None of Braden’s doctors had treated a child with acute flaccid myelitis —we had never even heard of AFM before. What we found is that AFM is a rare, polio like disease that causes limb weakness and paralysis after a cold. Soon after we looked for parents advice and started advocating for treatments and therapy. We felt like we were caught in a whirlwind and dropped into a new life, and that was a new setting, and new language, and new everything.
Nearly two months later, Braden stayed in the pediatric intensive care unit (PICU). He was tracheotomised and put on a ventilator to allow him to breathe for himself, and got a feeding tube to eat. He was then transferred to a rehab facility when he was stable. Braden worked so hard for nearly six months before he could come home.
Braden recovered—and continues to recover—through therapy. In rehab, we learned how to manage his trach and feeding tube and worked up a home therapy routine for him. On discharge he continued to work hard. An intense boost has come from home therapy outpatient therapy and several return trips to inpatient.
Our lives were changed. We brought home nurses in to look after him while he slept and we learned how to run medical equipment, how to keep his body safe and healthy. Now his siblings can appreciate disability and kids who are different. We don’t know everything about acute flaccid myelitis—especially that you should take seriously limb weakness after a cold is a medical emergency. But now, Braden is thriving – really thriving – even if he’s not exactly living the life (the one we expected) that we once had.
Rachel Scott is founder of the Accute Flaccid Myeltis Association and author of Alfredo’s Magic Wand: Acute Flaccid Myelitis is a Children’s Book. Above she is pictured with her family, Braden (lower left).
Is there a treatment for AFM?
AFM doesn’t have a specific treatment. But regardless of which doctors oversee the treatment, neurologic and infectious disease specialists will choose specific treatments based on the case. During the acute phase of the illness, most of the treatment is supportive—such as helping the child to breathe. Many AFM children have also benefited from early physical and occupational therapy.
We created a Special AFM Physician Consult and Support Portal for medical professionals to connect with neurologists who treat rare, complex neuro immune disorders including AFM.
Polio vaccines are still very important—they stop polio causing paralysis.
Before the polio vaccine was invented in 1955, poliovirus was extremely common in the United States. Every year it paralyzed and killed thousands. Vaccine for poliovirus poliomyelitis has made poliovirus poliomyelitis rare in the United States. A case of poliomyelitis was reported in New York recently and poliovirus was found in sewage there. If we don’t get vaccinated, poliovirus can spread and it only takes one infected person. So we still need to get routine polio vaccines.
More information
- Enterovirus: What Parents Need to Know
- Acute Flaccid Myelitis (AAP.org)
- Symptoms Acute Flaccid Myelitis (CDC.gov)
